Our little Weaner!

Yep...Par's just been weaning away! Tonight he is completely off his Epi drip, his Versed is down so low that there is nothing more to wean, just to stop the drip (but they haven't stopped it yet), his Nitric Oxide was turned down to 7.2 by the end of our visit tonight with orders for it to be down to 4 by morning (if he's still doing well), he had his belly sensor removed and finally, his oxygen is down to 50. The nurse said that there is talk of his Replogle tube (the one in his nose) being taken out by the end of the week (Par will be so excited!)and...with everything going so well--he may be switched to the conventional ventilator by the end of the week.

So here is the hard part--I have my hopes up so high. This is reminiscent of turning 16 and being SO SURE that my parents were giving me a car for my birthday (even though they said they weren't) and then waiting all day for them to surprise me with my car--the one that never showed up. Anyway, I just can't help myself--things are going so well and I find myself getting ahead of the game and in my mind he'll be fixed and ready to go home next week. I pray that God will calm my heart and mind--I pray that He will give me perspective so I may be a good (rational) mother for my son. I pray that God will comfort me as I learn the hard way that the road of CDH is bumpy--even though this stretch of it seems smooth. Rusty and I try to remember to be patient and we constantly remind ourselves of little Ella's journey and that Josh and Tina have been here for nearly four months (they are a perfect model of patience, perseverence, and trust in God during this journey we are now on). Nevertheless, it is hard to believe that only a week ago little Par was there with the ECMO machine warming up and blood in the cooler. With that being said, Rusty and I thank God for these good days that he has given us this week so we can experience loving our sweet baby on an upward climb.



This morning I read Par his daily Bible story and devotion (he always listens so attentively). He really does like his story time and when he is awake he stares at me as I read. This morning he was tired--but I'm positive the message was still heard. After that, he was awake for much of the day, but when he would settle down (allowing me to sit down) he would once again start moving around and "act up" so that I would get up and quickly come to his bedside to comfort him...I'm convinced this little boy is learning to "work the system" and will be so spoiled by the end of all this.






On another note, we are guessing Par was trying to get at his tubes again last night with how "bound up" he was--some how he still looked precious. This is probably good training for when we have to put him in a straight-jacket for being a mischievious little boy!

We continue to pray for baby Jonathan--he as put on VA ECMO today (he had been on VV ECMO). I had thought he was having his surgery today but it was postponed again. Please pray for his parents to have strength and understanding as they continue to wait for their son's repair surgery. Also, we continue to pray for Ella and her recovery--and her parents as they fight off the sniffles. Rusty and I know that this journey would be much more difficult without these two families--although we may not speak every day or know much about each other--their presence alone gives us strength as we stand at our baby's bedside. Again, I ask God to bless Par, Ella & Jonathan--such precious children.

Thank you for your continued prayers and support for our family.
Love, Liz, Rusty & The Little Weaner